1. Patient Participation in Research – a patient perspective
Hilary Jones
SUCCESS group volunteer
University of Wolverhampton – 19th September 2014
“Sharing Experience to Inspire Excellence”

2. Aims
Demonstrate practical areas in which patients and public can contribute to health research
Show how we can help shape outcomes at each stage in the research process
Illustrate how powerful it can be when professionals and public work together
Give specific examples and case studies

3. Involving Patients and Public in Research: Why Bother?
Faculty ethos
Statutory and professional requirements
Combined perspectives – holistic
academic + health professional + patient
Better understanding of patient experience
- targeted, clearly focused research aims
- integrated design and methodology
- rounded, robust and relevant research outcomes
- higher quality research
- potentially greater relevance or application

4. Practical ways in which we contribute to research: How?
Formal staff meetings - reps
Group discussion - projects
1-2-1 phone calls
Comments/feedback by
Presentations to postgrad students

5. Practical ways in which we contribute to research: What?
Faculty Committees
Research and Enterprise Committee – EOIs
Ethics
Course Management Committees
Induction Days
Service User Co-applicant – bids
Advisory Groups, Steering Groups
Patient volunteer groups
SUCCESS
RESULT

6. Co-ordinator: Rupy Pandaal
SUCCESS
Service Users and Carers Contributing to Educating Students for Services
How we contribute to the Faculty of Education Heath and Wellbeing
Student selection and admission
Teaching and assessments
Quality assurance
Participation in research activities
Co-ordinator: Rupy Pandaal

7. RESULT
Research Enabling Serviceuser and University Learning Together Mission statement: to promote the interests of ordinary people in the involvement of research throughout the West Midlands Chair: Dr Hilary Paniagua

8. Example 1: Organ Donation
Group discussion of Abstract – Nov 2012
eg how to approach the family, ‘family care’;
feedback incorporated, research title changed
Second stage – full application – Sept 2014
two service users to join Advisory Group
(five meetings over three years)

9. Example 2 : Delayed prescribing of antibiotics
Aug 2012 – RESULT group introduced to research idea
Dec – Group discussed research proposal with Prof;
useful ‘nuggets’ and a named SU/C co-applicant elected
Apr 2013 – Co-applicants gave feedback to draft proposal
May – Bid submitted to RfPB
Jul – Co-applicant reported back to RESULT members
Sept – Bid unsuccessful; resubmitted to PRUK and shortlisted
Dec – RESULT team encouraged a third submission
Ongoing consultation if successful
eg help identify key questions, questionnaire design

10. Example 3: Healthy Living Pharmacies
Join Steering Group – May 2014
Comment on project proposals – June 2014 eg
Study protocol
Study letter of invitation – eg layout, instructions
Patient information leaflet – eg tone
Consent form
Currently with Ethics

11. What do I contribute?
Service User experience and perspective
Questions
Honesty
What do I gain?
Confidence
New skills, renewed skills
Sense of joy, of making a difference

12. So what do the academics say?
Involving the patient and public voice can produce:
Research that is more meaningful in practice
Learning together that is mutually rewarding
Useful insights from a different perspective
Challenges to methodology that can sort out problems which might have arisen later
Valued members of the wider research team!